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Old 03-17-2015, 03:14 PM   #1
Heathcliff4
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Could use some positive thoughts

Hi,

I don't post often (don't even have my stats on my signature). I was diagnosed w. her2+++, er+, pr- stage 2 breast cancer in Aug. 2013. I had a bilateral mastectomy and immediately switched hospitals to UCSF. Despite having surgery already, I was able to get Perjeta as well as perception and the lymph node that had been missed in surgery showed no evidence of disease at my Pet scan in Feb. 2014.

I had a follow up CT scan (every six months) just yesterday that came back with a question regarding a node in my liver. The node had been there before in my first CT Scan in Sept. 2013. It was unchanged in Feb. 2014. It was there again in August and had grown 2mm. I grew again since then, a total of 2mm in the 7+ months since my last scan. However, this was the first time it triggered any concern by radiology.

My doc emailed me at 10 pm about this last night and said that it could very well be benign growth but they wanted more imaging. I managed to get a PT/CT scan this am and am sitting here waiting. I have two young boys (4 and 8), I JUST finished reconstruction and as you all know too darn well, this is a really, really tough roller coaster ride.

Thank you for your support. I am here a lot, just kind of quiet in the background.

Kathryn
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Old 03-17-2015, 03:15 PM   #2
Heathcliff4
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Re: Could use some positive thoughts

Sorry, Perjeta as well as HERCEPTIN (darn autocorrect!).

Kathryn
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Old 03-17-2015, 04:10 PM   #3
Crn
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Re: Could use some positive thoughts

Kathryn,
You are already in my thoughts and prayers.
Hoping it will be nothing out of the ordinary.
Fondly,
Cindy
__________________
Jan 2014 -mammogram, targeted mammogram, and ultrasound.
Feb 2014 -stereotactic biopsy (IDC, lobular growth pattern, grade 3, ER+ 30%, PR+ 1%, HER2+ 3+, ki67 10%), MRI - tumor up to 7cm, Lymph node biopsy - malignant.
Mar 2014 -port placement, chemo begins (TCHP)x6 every 3 weeks, Neulasta shots.
June 2014 complete chemo series, Herceptin only until Mar 15
Aug 2014 -Bilateral mastectomy with left axillary dissection (PCR in left breast, cancer cell found in lymph node).
Sept 2014 -radiation 28x
Oct 2014 complete radiation
Nov 2014 - begin Arimidex
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Old 03-17-2015, 04:44 PM   #4
Heathcliff4
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Re: Could use some positive thoughts

Thank you, Cindy. Your note actually really calmed me down.

Kathryn
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Old 03-17-2015, 06:34 PM   #5
rhondalea
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Re: Could use some positive thoughts

You must be beside yourself, Kathryn. I think sometimes that waiting is worse than knowing.

I found a small lump on my anterior axillary fold a couple of weeks ago. I stayed calm--at least outwardly--and I had planned to wait until my regular check to have it looked at, but then I felt myself becoming...unsettled. Okay, I was flat out unnerved, so I finally broke down and saw the onc early. He said "scar tissue," and he offered me an ultrasound, but he didn't think I needed it, so I turned it down. Scar tissue is good by me.

My hope for you is that the additional scans will give you a similarly innocuous result. From what you describe, it really does sound like that's the case. I did a quick Google about benign liver growths, and this was the consensus:

Benign liver tumors are relatively common. Same for liver cysts. Most often, they're not even detected unless a patient undergoes a scan for some other reason, because they rarely cause discomfort.

Hold that thought.

Rhonda
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 03-17-2015, 06:54 PM   #6
caya
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Re: Could use some positive thoughts

Hey Kathryn,

Years ago before B.C., I had a transvaginal and pelvic ultrasound (for various reasons). The scan found a cyst on my gallbladder - I had no symptoms, no discomfort, but because it was found, I had to been seen by a specialist. Of course I was a wreck until I saw him - he was very reassuring, told me that 99.9% of the time these cysts are benign, but that we would have to watch it for a few years. If it grew or I had any symptoms, out it would come. So for about 10 years I had to have the pelvic u/s, they would measure the cyst, nothing changed, and then the doc told me after 10 years I did not have to continue with the yearly u/s.

I am praying for you that your "growth" is also benign, as most are.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
14 Years NED!!
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Old 03-17-2015, 07:55 PM   #7
Heathcliff4
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Re: Could use some positive thoughts

Ladies, You were so helpful to me tonight. My oncologist called at 5 pm to tell me all was fine and that my PET was negative. This 1 year mark CT scan really had me scared. And, when it came back with something suspicious….my mind just kept fast forwarding. On the plus side of all of this, I got a PET scan as well as CT (which normally wouldn't have been approved by insurance) and all is clear in the brain and other areas.

I have come to this site so many times in the last 1.5 years and read so many stories. I knew that even if the news was not good, so many women on here have many, many years of good health despite setbacks.

Thank you so much for helping.

Kathryn
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Old 03-17-2015, 08:24 PM   #8
rhondalea
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Re: Could use some positive thoughts

Yayyyyyyyyyyyyy!

So glad for this result.
__________________

2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 03-18-2015, 02:30 AM   #9
michka
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Re: Could use some positive thoughts

I am happy to read this good news Kathryn!
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 03-18-2015, 05:02 AM   #10
sarah
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Re: Could use some positive thoughts

Hi Kathryn,
So happy the news was good. Herceptin and now with Perjeta added are great drugs. Life savers
Enjoy your children.
be well
love sarah
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Old 03-18-2015, 08:26 AM   #11
thinkpositive
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Re: Could use some positive thoughts

Kathyrn,

So glad your news was positive! I'm sure that you are breathing a huge sigh of relief. You were diagnosed at the same time I was so we're both pretty early on in the "no treatment" stage. Although I'm really glad to be done with completing the one year of Herceptin, it is taking some getting used to not having treatments. Its hard to not constantly worry about a recurrence of some kind. Worrying never changes anything but it hard not to.

Take care
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8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 03-18-2015, 09:46 AM   #12
AlaskaAngel
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Re: Could use some positive thoughts

Hi Kathryn. I had some spots show up in the liver and change a bit at first too. As mentioned above, probably they were there before any bc, but I had periodic ultrasounds for the first couple of years.

A controversial measure that I and my doctors were able to use along with that was that both I and my PCP and my onc all favor the use of markers (either CA 15-3 or CA 27.29). It is true that they aren't accurate for everyone, and may not even be accurate for anyone ALL of the time. But it gave me and my doctors one more very rough factor to consider in deciding whether to scan when we were on the fence about scanning. The facilities vary in whether their lab uses the CA 27.29 or the CA 15-3, and at first I was having the CA 27.29 and then later was changed to the CA 15-3.

I would like to note that for me, I have not recurred in over 12 years, and the only time my markers were a bit above normal range was during the time I was doing chemotherapy (which is a cause of great inflammation in general). Since completion of tx, mine have remained entirely within the normal range.

It is just a suggestion to consider.

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 03-18-2015, 04:45 PM   #13
Crn
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Re: Could use some positive thoughts

Kathryn,
This time, your note really calmed me down. : ). I am so happy to hear your news!
Keep the faith,
Cindy
__________________
Jan 2014 -mammogram, targeted mammogram, and ultrasound.
Feb 2014 -stereotactic biopsy (IDC, lobular growth pattern, grade 3, ER+ 30%, PR+ 1%, HER2+ 3+, ki67 10%), MRI - tumor up to 7cm, Lymph node biopsy - malignant.
Mar 2014 -port placement, chemo begins (TCHP)x6 every 3 weeks, Neulasta shots.
June 2014 complete chemo series, Herceptin only until Mar 15
Aug 2014 -Bilateral mastectomy with left axillary dissection (PCR in left breast, cancer cell found in lymph node).
Sept 2014 -radiation 28x
Oct 2014 complete radiation
Nov 2014 - begin Arimidex
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Old 03-18-2015, 08:35 PM   #14
Heathcliff4
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Re: Could use some positive thoughts

Wow. Thank you so much for all of your kind words, suggestions and just acknowledgments of how damn scary some of these moments can be. I feel fortunate to have found this group.

Take care,

Kathryn
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